Symptoms getting worse. Scared and desperate.

Status
Not open for further replies.
S

Sugarplum80

Member
Relationship to Diabetes
At risk of diabetes
Hello. Can anyone help me?

Woman aged 41. BMI 42. Fasting bloods had been 8-9 for at least 2 years , but always normal HbA1c so no diagnosis. I have literally begged my random GPs to take me seriously I’m the past, but they wil not consider anything but HbA1c as an indicator.
Symptoms had included tiredness, tiredness after eating, constant thirst, frequent peeing, sweet smelling pee etc.
This year my eyes have developed lots of dark floaters in them. Since early 20s If I drink alcohol I sometimes have extreme pain on left side mid back under the ribs. Pancreas playing up? Always lasted a few hours then went. I avoid alcohol because of this.

Why do I have normal HbA1c? I don’t know for sure. My 23&me genetic testing shows I have H63D variant of hereditary heamochromatosis. I have been severely anaemic in the past (scores of 10 and 30). Both reasons my my blood cells have a faster turn over and therefore less glucose on them.

Three weeks ago something happened. I don’t know what, but my symptoms got a lot worse. The pain in my back is now constant and is moving up and across my back. I burb constantly. Im shaking and shivering after the smallest meals. No appetite. When I do eat I will have a few mouthfuls and I’m full. So cold and sleepy afterwards I’m having a 2.5 hr sleep after meals. I can’t sleep longer, the pain is so bad.
What am I doing about it? I’ve been to the GP 3 times in 3 weeks. ESR was 70. My inflammation score have always been around 40 for no reason, but 70 is high for me. Today they measured my fasting blood glucose after 18 hours fast ( and that was an apple for supper yesterday). It was 13.2. They sent me to A&E. The notes mentioned IPS. I spent 5 hours there. They did my HbA1C. 4.2 - normal. I begged the 27 year old on duty to consider I have diabetes and something sinister is happening to my Pancreas. I described all this and he sent me home telling me to limit myself to 2 litre of fluids a day. I have that much in the evening usually and still thirsty..
I feel very scared and hopeless. I suspect I’ve got a problem with my pancreas which is making my diabetes worse. Is there anyone who can help me see a way through this? My symptoms are getting worse. I’m worried about Pancreatic cancer - yes I know unlikely. How can I get a diabetes diagnosis? I see this as a first step to understanding what is happening. Sounds dramatic, but I’m worried for my life.
Thank you for reading all this 🙂 any help appreciated.
 
Last edited:
I forgot to say 1) My dad is diabetic T2 and 2) I’ll go private if I have to. I just don’t know where to start to find a reputable and sympathetic doctor. There’s plenty of stuff on line about HbA1c test being flawed, but NHS will not entertain diagnosing diabetes without a high HbA1c. Feels hopeless.
 
Last edited:
Hi there, your message has brought back some very similar feeling I once had. I can’t answer all of your questions but I know exactly how anxiety around you health can effect you. I have had issues with blood sugar for almost over 20 years until finally I was diagnosed with type 2 last year. I was not your typical candidate for type 2 so Due to some other symptoms mainly anaemia, pain under ribs unable to swallow food low body weight etc, this led to investigations for pancreatic cancer, bowel cancer and gene testing for breast and ovarian cancer, I had mri, Ct and a camera down my throat for stomach cancer. I was 43 at the time. I was absolutely convinced my days were numbered and to my complete shock my results were all clear. My diagnosis was later changed to type 1 as I had some positive antibodies. This is still under investigation although this is a slow process. Have you had a full blood count? As your hba1c is normal then your sugars must be behaving the majority of the time. Do you test during the day? High fasting may be the early signs of a little resistance to insulin. Type 2 often comes in a couple of stages, insulin resistance, pre diabetes then type 2. You may of caught it early and if this is the case there are many things you can do to keep that at bay, but the first thing is to understand exactly what is going on. As for private doctors, If it’s something that you can afford, I have found great comfort using them. When my doctor put me on the 2 week cancer pathway for stomach cancer, the guy who did the procedure said as he had found nothing that the next thing would be mri for pancreatic, and that this would could take months so I went private the same week. I also spoke to a fabulous gastroenterologist about my stomach problems he explained to me that for every 100 people he speaks to with my symptoms that only 1 or 2 will have anything serious going on. In the end mine was all put down to anxiety. I obviously can’t tell you this is what’s going on with you, but I just wanted to let you know no1 your not alone and no2 the body can produce some very alarming symptoms when under stress. Including a dry mouth, anemia can also make you thirsty with me I had to crunch ice all day. I’m sorry if this message is a bit of a ramble, I’m trying to get it all out before my house erupts into its usual morning chaos. Please keep coming back with any worries you have if I’d of been here when I was going through similar I think I could of coped a little better. Big hugs and take care xxx
 
Emma, thank you. I’ve had a little cry and will re-read your response when I’m a little more ‘together’. I’m pathetically grateful to you for sharing your story. Health anxiety - yes I almost certainly have it.

I will look for a gastroenterologist on google and see how that goes. Will keep you posted. 🙂
 
Also just quickly, it’s an endocrinologist you would need to speak to if you would like some investigations into you blood sugars. These usually cost around 170 up to 250 for a first appointment. Your GP will probably not be much use to you with a normal a1c and if this is something that’s really effecting you then sometimes for peace of mind it can be worth a chat with an endo, at this point he can decide what other test if any he thinks you may need and costs around those will be discussed should you wish to proceed. This would need a referral from your gp and up to date medical records including all your recent blood tests etc xx
 
Sugarplum80 said:
Emma, thank you. I’ve had a little cry and will re-read your response when I’m a little more ‘together’. I’m pathetically grateful to you for sharing your story. Health anxiety - yes I almost certainly have it.

I will look for a gastroenterologist on google and see how that goes. Will keep you posted. 🙂
Click to expand...
Ahh bless you, you have a good cry. Just keep talking, and we will always be here xx
 
Hi

So very sorry to hear you are feeling so unwell and you are so anxious about it. I wonder if a Freestyle Libre sensor might help to shed light on what is going on with your BG levels. I appreciate that you are not currently diagnosed with diabetes so I am guessing you wouldn't qualify for the free trial but you can purchase the sensors and 2 weeks of 24/7 data from a sensor together with a detailed food and drink diary and maybe notes on your symptoms might provide any Endocrinologist you go to see with a lot more info on your glucose levels to help understand what might be going on. They cost around £50 for a sensor which is applied to the back of your arm and lasts 2 weeks and gathers data every few minutes day and night. You would need a suitable phone to scan it with, but the data it provides can be very helpful. The time in range function is thought to be a much better assessment of BG management or variability than HbA1c which is why I thought to suggest it.

I'm afraid I can't offer any other input or experience which might help but I do send some virtual (((HUGS))) as it sounds like you really need them.
 
Hello. I am afraid I cannot shed any light but the fast turnaround of red blood cells would cause issues with HbA1c. As an alternative to a Libre it might be worth considering a Blood Glucose Meter in the first instance. Your local pharmacist is probably best placed to advise you on a meter and ongoing costs (strips). Results over a few days to a week could prove interesting. I would suggest before meals, 90 minutes after meals and before bed.

Forgive me but I couldn't help but notice your BMI. You don't seem to eat much so I was wondering if you had been tested for thyroid issues?
 
Ahh bless you, you have a good cry. Just keep talking, and we will always be here xx
Sorry just another thought, have you had covid? I’ve heard inflammation markers can stay raised for quite some time after covid infections.
 
Sugarplum80 said:
Why do I have normal HbA1c? I don’t know for sure. My 23&me genetic testing shows I have H63D variant of hereditary heamochromatosis. I have been severely anaemic in the past (scores of 10 and 30). Both reasons my my blood cells have a faster turn over and therefore less glucose on them.
Click to expand...
That could screw up an HbA1c, yes. Haven't GPs taken that seriously, at least to do HbA1c and anaemia tests at the same time? It's well known that those can interfere.
 
Hi Sugarplum80, welcome to the forum.

Really sorry to hear about the health issues you're facing. It's awful when you're experiencing worrying physical symptoms and it feels as though no one is taking you seriously.

There's obviously something going on and for that reason alone, it's worth investigating further. Would your GP make a referral to an endocrinologist to get their view?

It does sound that there are coexisting factors that may be skewing the results or at least making it harder to get to the heart of the issue.

You're welcome to give our helpline a call at anytime to talk things through with a friendly ear.
 
Thank you everyone for your thoughtful and helpful responses. Appreciated, really.

I had an NHS emergency ultrasound today. Showed a very fatty pancreas but not a fatty liver. Of course I’m now terrified of non alcoholic fatty pancreas disease -> Pancreatic cancer. At least it might spur my GP in to action. Trying not to focus on it. I booked a consultation in with an private endocrinologist next Tuesday which feels a long time away but at least I’ve made steps. Thanks @EmmaL76. No I’ve not had Covid and I’m double vaxed.
@rebrascora Thank you for the tip on automatic measurements. Will read up on it. Seems very reasonably priced.
@MikeyBikey I did buy a blood glucose meter but the strips went out of date and when I went back to Amazon to buy more the company no longer existed. You are right though, it’s easy and accurate but not paying another £100. Re. BMI, I am fat through eating and dislike of exercise, but I am active. It’s only these last 3 weeks that I can’t face food. Not hungry at all but when I do eat ( veg or fruit ) I get nausea, worse pain, burbing, feeling very cold, sleep etc.
@Bruce Stephens no they haven’t done them at the same time. I will ask. Thank you 🙂

@Cherrelle DUK; Thank you. It is a nightmarish rollercoaster of emotions - mine and my loved ones who depend on my. Feels awful anyway, the not being believed makes me doubt my own sanity. Thank you for your words and sorry for bei a downer. Really everyone thank you
 
Sugarplum80 said:
Thank you everyone for your thoughtful and helpful responses. Appreciated, really.

I had an NHS emergency ultrasound today. Showed a very fatty pancreas but not a fatty liver. Of course I’m now terrified of non alcoholic fatty pancreas disease -> Pancreatic cancer. At least it might spur my GP in to action. Trying not to focus on it. I booked a consultation in with an private endocrinologist next Tuesday which feels a long time away but at least I’ve made steps. Thanks @EmmaL76. No I’ve not had Covid and I’m double vaxed.
@rebrascora Thank you for the tip on automatic measurements. Will read up on it. Seems very reasonably priced.
@MikeyBikey I did buy a blood glucose meter but the strips went out of date and when I went back to Amazon to buy more the company no longer existed. You are right though, it’s easy and accurate but not paying another £100. Re. BMI, I am fat through eating and dislike of exercise, but I am active. It’s only these last 3 weeks that I can’t face food. Not hungry at all but when I do eat ( veg or fruit ) I get nausea, worse pain, burbing, feeling very cold, sleep etc.
@Bruce Stephens no they haven’t done them at the same time. I will ask. Thank you 🙂

@Cherrelle DUK; Thank you. It is a nightmarish rollercoaster of emotions - mine and my loved ones who depend on my. Feels awful anyway, the not being believed makes me doubt my own sanity. Thank you for your words and sorry for bei a downer. Really everyone thank you
Click to expand...
Sorry to hear of all your troubles but at least you have managed to get something underway which hopefully will help.
If you want to replace your blood glucose monitor then The GlucoNavil is inexpensive with the cheapest strips which are on Amazon.
 
Sadly it sounds as if you were conned! As Amazon has expanded there has been some serious overcharging particularly by Amazon shops. I got my Accu-Chek meter for under £20 at my local pharmacy. As a Type I strips are free but I occasionally buy them buy extra. They come in at about £20 for 50. I did buy some of Amazon once and they expired six weeks after delivery!!! I do buy the odd book and CD off Amazon but little else after experiences with undersized slippers and clothes. I love M&S and John J Lewis.
 
@Sugarplum80 I went direct to the Spirit Healthcare website, registered, waited for the confirmatory email, and then could order meter and strips etc direct and without VAT. That was some time ago now so I don't know if the low prices have been maintained, but it was nowhere even close to £100 - even though it was several lots of strips, box of lancets and the meter kit itself.
 
Sugarplum80 said:
I bought a kit on Amazon for less than £25 with 50 test strips. Can’t think how I managed to spend so much money last time. Thank you @Leadinglights @Drummer and @MikeyBikey 🙂
Click to expand...

Don't beat yourself up over it - there are always people ready to take advantage. At the start of the pandemic there were people offering pocket sized hand sanitisers for £10 and face masks inflated by anything up to 1000%!
 
Well very similar to me,

As a 2x gestational diabetic - my father is type 1. I knew my symptoms were diabetic related .. At that time my Hba1c was 38 so completely under the threshold. I had a meter a home and new that certain foods pumped my BG through the roof .. I fought and fought with my doctor , who like yours was not interested given my Hba1c.

I took a foot infection that went on for 8 painful long months and one day I had a breakthrough with a locum. He contacted my diabetic specialist who treated me whilst pregnant, he was also my fathers doctor.

He wrote to my surgery an told them regardless of my HBA1C I was to have an OGTT.

I did the test and it showed my sugars going through the roof I definately had a diabetic problem and that my HBA1C was low because I was doing my hardest with my diet to reduce the effects as my doctor washed his hands of me.

Can I just say though , and I still argue to this day with my doctor, Im not aware of symptoms due to consistent high levels ( apart from the foot infection as I know that was impacted) All my symptoms come from the rising sugars going up up up and then slowly titering down, they make me sleepy, angry, irritable, thirsty you name it.

I hope you get something sorted soon ... Its funny how peoples experiances can be similar and yet different ... I suppose its the very nature of the beast
 
Hi @WEEHOTTY. Wow that does sound really similar to my experience! Thank you for sharing. I had pretty awful ear infection caused by Pseudomonas aeruginosaa last year. Went on for months and blew my eardrum out. When I read up on the bacteria it mentioned that this common bug doesn’t usually bother healthy people but common in diabetics.

I hate that we have to ‘fight’ GPs. Awful to feel like a paranoid nuisance and a drain on the nations resources.

I’m going to ask for a OGTT when I see this private doc next week. They can only say no. THANK YOU!
 
Hello! I’ve now had my new £20 BG monitor for 3 days now. Thanks for recos. Went for Sinocare in the end. Since I’m eating very little (typically 2 pieces of fruit a day due to nausea) I am in ketosis (confirmed by urine monitoring sticks). My fasting BG have never looked so good. 12 hour fasting last 3 mornings have been 5.5, 4.5 and 3 respectively. Does anyone have an idea of whether this precludes me of being diabetic? Since being in ketosis my thirst has stopped and my feet are much less scaly. Pain and burping not stopped but hey ho.

I think I will have to switch out of ketosis and eat a carby meal to really understand if I’m diabetic. Can anyone confirm? Thanking you kindly 🙂
 
Status
Not open for further replies.
Back
Top